life • love • learning
with our girl at the edges of the autism spectrum

Saturday, March 28, 2009

Another Version of Aging Out

Last month I went to California to be with my father when he died and to be with my family at his funeral. The funeral was exactly a month ago today.

On the phone from California to New York, I asked Sweet M if she wanted to come out for the funeral and she said, "Uhp-hummm (feigned throat clearing), the school, uhp-hummmmm, the homework. Remember 'the working hard' and 'the study hard'. I can't go, I have school."

It's sort of hard to convey the inflection, but imagine a snarkey teenager (though she's not that old yet) mimicking back everything you've ever said about working hard and studying hard. She completely has my number with that "working hard" bit.

So she and Fathersvox stayed in New York and I navigated the end of life terrain — the ultimate aging out — without them close at hand. Perhaps this is the aging out that has weighed most heavily on my mind.

I have written very little about my father's illness. In part that is because I have been some 3,000 miles away, dropping in as I can to assess the state of his life and my mother's, but largely unable to be of much help.

Alzheimer's seems to be a 1,000 little deaths followed by a sigh of relief. There are so many losses all along the way that the work of mourning is nearly done by the time death arrives.

There were his years of pretending to understand us, of covering for his memory loss, followed by the getting lost at the airport in 2001 and then the many episodes of losing his car and finally "losing" his car keys when my mother finally took them away, then there was the forgetting of his AOL password and then end of his emails, and then the end of reading novels by the dozens as he once had, and the beginning of wandering and falling down, the brief and sometimes less brief hospitalizations, and then the not wishing to bathe or shave or change his clothes, always the terrible fear of losing his mind, and the inability to remember our names, words, places.

In the last year there was the confinement in an assisted living facility that was thought to be safe and fine but that harbored everything from extraordinary care to incomprehensible sadism. Then there was the effort to get him home, then the hospice care, the precipitous decline and the several days of labored and then quiet breathing, and then quiet and a slack-jawed moment that is so hard to comprehend that surely it has given "slack-jawed" its very meaning.

All of this is followed by a flurry of funerary activities to distract one for what has just unfolded, and to provide recognition of and closure on one man's life.

So I am not at all sad about my father's passing. I am relieved for him and for my mother, who labored to provide his care for all these years.

Sweet M took it somewhat differently.

When I got back she said, "So Grandpa's dead."

"Yes."

"So I guess that means he won't see me go to middle school."

"Yes, he won't see you go to middle school. Well, some people think he can see you from heaven, but I'm not sure about that -- I'm not sure how that would work."

For her it is still exclusively about the people who see her and love her and celebrate her. It is about her place in the world. Perhaps that is how it is for everyone, but she has not yet learned to dissemble regarding her M-centric world.

We looked at the photos that I took to show her what the funeral was like.

"Hey!!!! You got to ride in a limousine. I want to ride in a limousine! I want to go to the funeral."

"Well honey I invited you and you said you didn't want to come because you had school."

"I know, but I changed my mind and now I want to go."

"I can see that you do want to go. But we can't go back in time to do it over again."

"Because scientists haven't invented time machines yet?"

"Yes. And because so far as we know time only goes in one direction."

"Okay, but I really, really want to go to the next funeral."

"Okay."

"You promise?"

"Yes, I promise."

"Who's going to die next?" she asked with excitement.

She could have been asking "when will Santa come?" so lacking is she in even the slightest trace of socially appropriate fear, grief, or bereavement. Nothing but unbridled delight and anticipation.

• • •

That is what I love about autism's edges. We always have something to look forward to because it remains the upside-upset-down world where strength and weakness, good and bad, joy and sorrow, asset and liability, are impossible to distinguish.

7 comments:

Our guy said the same thing when my dad passed two years ago (which would make him about the same age as Sweet M at the time). His major complaint was that his grandad would not see him go to high school. Odd that.

Thinking of you and your family. It's interesting how children perceive death. Patrick's schoolmate lost her mom and, although he did recognize that she was sad, he was mostly focused on the fact that the school threw her a birthday party because her mom couldn't (her birthday and her mom's death were within a day of each other). He kept saying "so, if you get really sick and die then I'll get a party?".

MOM-NOS has written a must-read post about Post-Traumatic Stress Disorder and Autism Spectrum Disorders at Hopeful Parents. The takeaway ...

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